I've got Stargardt's and have had tons of the same experiences as you. Now I've don 2 study abroads, one in undergrad and 1 in law school, and I also managed airports and train stations all by myself. It was a really proud moment for me when I finally got comfortable asking people for help. I got diagnosed 12 years ago at age 12, and I've been plateaued since I was about 17 or so. So glad to find someone else who has my same struggles and frustrations. Feel free to message me if you like!
Hey Kid! Just found you and subscribed! I'm 46 and diagnosed at 10...life was a real drag in the 70's and 80's when no teachers believed me and my own parents seemed to doubt me. Thank God for modern tech...you're probably part of a lucky generation who will see a cure as you say in this video. Thank you for sharing! xoxo
My niece has Stargardts whose ten years old. I played your videos in the background while she played on her Ipad. I kept hearing her say, "Me too". It was so touching! Thank you. I would love for her to talk with you. :) She was diagnosed at 7.
Hi! That was really nice to hear that people go through the same thing as you! I was diagnosed when I was 8 years old in 2008. It's been hard, like mine yes are constantly changing and all, but it good to have a reassurance this these things to know that we aren't alone and they we can do anything! Thanks for sharing!
Megan, I applaude you. I have a friend with stargardt's. Sometimes, people never even know until they see him with his eyepiece 2 inches away from whatever to read, lol, like u said. He's such a champ with it. I think you are too. I do realize how hard it can be, and the hurdles you guys must have. Im happy to be a support to him as he inspires the hell outta me :) I agree with the previous closing comment- I so admire you're attitude. Good luck to you... though I truly think you got this ;) Happy New Year!! Make it Awesome!!
Megan..wow thank you so much for posting this video! I agree nothing on the internet:( My husband has been living with Stargardt's for 22 years ago. So he had 20/20 vision till 18 and I feel that helped prepare him for the future. He is an inspiration for he never gave up. He finished college, has a great job and drives. I pray for a cure for you all! But please keep your positive spirit and never give up!!
Omg i completely understand what youre going through, im 16 and me and my younger brother have been diagnosed. Its incredbly frustrating im glad other people know how it is because trying to explain it to people is just annoying! Lol
I've had Stargardts disease since 2008 as well, it was always my biggest fear, going blind. And it's really honestly nice to see someone finally talk about it in here, because nobody really understands what it's like until it happens. I'm proud of what you've done in life and really hope that I can accomplish what I want :)
Hi there. I'm 33 and also have stargardt. There is an unproven theory that bright light accelerates the macular degeneration, therefore it is recommended to use sunglasses. Also coloured glasses can improve our abillity to see shapes and focus better. I always use inverted colours on my computer, phone and tablet to reduce my eyes exposure to bright light.
Dear Megan, first of all, a big compliment to you for coming out with this video! You are incredible, and I wish you all the best in life! Hope you find your best goal in life, and one day, I pray for a cure for Stargardt.
Stargardt can be effectively treated and reversed by nano-grade eye drops. Within one hour after applying nano-grade eye drops, lipofuscin can be excreted from RPE (retinal pigment epithelium) to outer cornea. Is it so amazing ! To apply nano-grade eye drops 8 times daily for consecutive 3 months, it's plausible that vision can be restored because Muller glia are retinal stem cells that can be triggered by nano-grade eye drops for regeneration of optic nerve, photoreceptor cells and RPE. Please browse www.godforeye.com All glory belongs to God ! God bless all Stargardt's patients.
It's really good to see people with the same problem because they are the only ones who can just not understand but can feel the pain within. I feel I'm not alone now
My friend has Stargardt's for 25 years. It has now run its course untreated but he still has a normal life and many people do not even notice. Driving and reading can become hard, but this disease will not make you completely blind to my knowledge. Also, there is a lot of research and promising cures in the pipeline and it is now possible to reverse or at least halt the progression in the earlier stages.
i am so used to having stargardt that it did not come to me to make a video before seeing yours.. i have stargardt for 10 years and my vision is very bad but it dose not matter since i am ok with it. i will star making my set of videos that you will not understand since they will be in romanian but.. thank you for the idea and i am glad to see i am not the only "full" to be ok with having stargardt
Great video! I am also legaly blind due to a inherited eye problem. Like your good spirit! Do you know that there is a special guide/assistent service available for visually impaired while flying! Then you will be treated like a VIP! I have used it and my youngest daughter who travels a lot uses it when she travel by her self. Keep more videos coming! Greetings from Sweden Stefan
u wanna know whats the worst thing is not being able to drive i had it for 16 years but always stay positive i am thankful everyday for the sight i do have
I agree.. I am living with the condition 20 years.. I'm 28 now, I'm Irish and I live in the countryside and I would give anything to be able to drive!!
Hey! my name is abby and im 15. I also have stargardts. Thank you for making a video because you are only one of three people who i even know have it. It is good to hear from someone in college because i am worried about that. I start college clases next year (im a sophmore now.) Can you drive?
+chelseastar2001 hi! i'm sorry I am just now seeing your comment. for most people, Stargardt's doesn't get worse after being diagnosed. it usually stabilizes. some people, however, experience a gradually decline in their vision over time. My vision hasn't changed since I was diagnosed 8 years ago. On the positive side, there is so much research being done on the disease, so I am hopeful a cure is just around the corner!
HI Megan, my name is Luis i live in mexico i just found out last week that i have stargardt but i have 14 years with visual problems and glasses really never helped but nobody understands why i have glasses but still can't read, i play sports and i'm pretty good at basketball and my friends still don''t understand how can i play so well having this visual problem, and i also don't understand how can i play that well if i sometimes have problems seen the basket jajaja, and is really good to know that other people have this problem and really understanding a little bit of this disease, hope you are ok and thanks for this video :D
hey, Luis! thanks so much for watching and sharing a bit about yourself with me. it can be tough living with Stargardt's sometimes, but it isn't the end of the world. we face challenges others may never face, but we grow a individuals because of those experiences! i hope all is well with you! take care xoxo
Hi, You did a very nice video. I am also passing through Star guard. Wish to know the techniques that you apply and any recent technology that can help us.
I know it's hard having this especially during teen years. I am now 25,but went through HS with this. People don't understand things so they may make fun of it. Just know those who may make fun are ignorant, and just ignore it. Don't let it bother iyou at all. Ppl are immature at that age, just educate ppl who may not know..
Great video megan..!! Do you know anyone who participated in a clinical trial ? I am planning to be a part of a clinical trial about to start in a couple of months in Los Angeles, CA at UCLA. Anyone knows somebody who was in a clinical trial it would be very helpful for me
Hello Megan, My daughter just got diagnosed with Stargardts. She is a college student as well. Have you looked into any recent research studies like stem cell or anything else? There seems to be a lot of promising results out there. What do you recommend?
Megan. My son is 8 and we have a high probability he has starguardt. I will try to get the app to understand how he sees. Can you please tell me your vision 20/X? Thanks for the video.
i think i have one it seems progressing. late 2014 i have a symptoms of gray shades but this year 2018 new symptoms appear which is permanent black(white eye closed) spot and high sensitive to bright lights. what scares me is that im 26 right now, scared being blind when i reach 30s. i don’t know how fast is the disease will progess.
i have Stargardt and trust me no doctore is trying to heal this problem because there ain't many people like us and they won't get a lot of money from the treatments. this is life :(
Finally i know this video is from 2013 but i am still looking for someone to reach out to i have been diagnosed since age 9 i am now 21 and i am at end stages would love to connect and talk
I haven't been diagnosed yet, but I have a very high chance of having stargardts. In school its horrible, not being able to see the board or anything. Btw, im from Wales, UK.
Tyler Ashfield hey Tyler! thanks for you comment. school can be incredibly difficult at times, but just remember that you have every right to succeed, just like any other student. it's hard to accept help from others sometimes, because it makes you feel like you can't take care f yourself, but don't let pride get in your way. if you wanna chat more, feel free to add me on facebook! i've got lots of unsolicited advice to give :) fb.com/megan.whitman.52
I have stargardts and anytime I text and FB i always have a milion type-O's on my messages and people simply think I am a dutz. But in really I type blindly without being able to ready what I post. I jjust deal with it. Sometimes I feel like my family does not understand how serious of a condition this is.
i have it since i was born, im colorblind and see blury .. they said it wont get worse im just 17 but it's really scary.. coz i always think i would get blind in the future ;/
OMG hi! My names kaytlin I'm 14 I I have stargaurts I've never been able to find anybody that has this and understands what it's like ! I was diagnosed in 2011 I'm just starting jrh and they gave me this thing called a visio book and I absolutely hate it and I've gotten made fun of because of it my vision is 20/200 my vision has stop getting worse it's so hard because everybody thinks that my vision is blurry and all this stuff and nobody listens to me any advise !?!?!
i have stargardts too i would really like to contact with you im from morocco, africa and im only 16years old i found that im legally blind a year ago i would love to hear you story and tell you mine
+Ouhramskour hi! sorry for my late reply to your comment. i'd love to chat with you about your experiences with Stargardt's! add me on facebook and we can connect facebook.com/megan.whitman.52
Some Stargardt's patients treated by God's mercy, i.e. nano-grade eye drops, are greatly improved their vision and they're so willing to be the witness so that other Stargardt's patients can be coveted by God's mercy too. Please browse www.godforeye.com or contact: service@lorati.com.tw All glory belongs to God ! God bless all of you !
hi there :) im cinndy .. well i have a friend she has stargardt .. she's always crying and telling me that there's no cure . i cant see her in that place. she's always saying "theres no cure. im getting blind". i dont know what im going to say to make her stop. :(
Thanks for reaching out! If you need someone to talk to, you can always contact me on Facebook! fb.com/Megan.whitman.52 I'm happy to help however I can!
hey girl! Stay positive, I also have stargardt's and I had a hard time accepting it so I kept it a secret. I completely understand your college challenges as I am unable to attend dental school because of stargardt's.… But know I doing great and I started a blog! www.blindgirlssee.com meganwhitman
Hi! I was recently dignosed with stargardts and you have no idea how much this video actually has helped me. I'd love to actually talk to you about it and get some advice of you since you have been dealing with it for a number of years. If it is okay with you, you could add me on facebook? My name is Kya White. Xx
I've got Stargardt's and have had tons of the same experiences as you. Now I've don 2 study abroads, one in undergrad and 1 in law school, and I also managed airports and train stations all by myself. It was a really proud moment for me when I finally got comfortable asking people for help. I got diagnosed 12 years ago at age 12, and I've been plateaued since I was about 17 or so. So glad to find someone else who has my same struggles and frustrations. Feel free to message me if you like!
Hey Kid! Just found you and subscribed! I'm 46 and diagnosed at 10...life was a real drag in the 70's and 80's when no teachers believed me and my own parents seemed to doubt me. Thank God for modern tech...you're probably part of a lucky generation who will see a cure as you say in this video. Thank you for sharing! xoxo
My niece has Stargardts whose ten years old. I played your videos in the background while she played on her Ipad. I kept hearing her say, "Me too". It was so touching! Thank you. I would love for her to talk with you. :) She was diagnosed at 7.
Hello! I have lived with Stargardt's for at least thirty six years. Just dig in and do whatever you want. We are different and unique people.
Hi! That was really nice to hear that people go through the same thing as you! I was diagnosed when I was 8 years old in 2008. It's been hard, like mine yes are constantly changing and all, but it good to have a reassurance this these things to know that we aren't alone and they we can do anything! Thanks for sharing!
Megan,
I applaude you. I have a friend with stargardt's. Sometimes, people never even know until they see him with his eyepiece 2 inches away from whatever to read, lol, like u said. He's such a champ with it. I think you are too. I do realize how hard it can be, and the hurdles you guys must have. Im happy to be a support to him as he inspires the hell outta me :) I agree with the previous closing comment- I so admire you're attitude. Good luck to you... though I truly think you got this ;)
Happy New Year!!
Make it Awesome!!
Megan..wow thank you so much for posting this video! I agree nothing on the internet:( My husband has been living with Stargardt's for 22 years ago. So he had 20/20 vision till 18 and I feel that helped prepare him for the future. He is an inspiration for he never gave up. He finished college, has a great job and drives. I pray for a cure for you all! But please keep your positive spirit and never give up!!
Omg i completely understand what youre going through, im 16 and me and my younger brother have been diagnosed. Its incredbly frustrating im glad other people know how it is because trying to explain it to people is just annoying! Lol
I've had Stargardts disease since 2008 as well, it was always my biggest fear, going blind. And it's really honestly nice to see someone finally talk about it in here, because nobody really understands what it's like until it happens. I'm proud of what you've done in life and really hope that I can accomplish what I want :)
Hi there. I'm 33 and also have stargardt. There is an unproven theory that bright light accelerates the macular degeneration, therefore it is recommended to use sunglasses. Also coloured glasses can improve our abillity to see shapes and focus better. I always use inverted colours on my computer, phone and tablet to reduce my eyes exposure to bright light.
Dear Megan, first of all, a big compliment to you for coming out with this video! You are incredible, and I wish you all the best in life! Hope you find your best goal in life, and one day, I pray for a cure for Stargardt.
Stargardt can be effectively treated and reversed by nano-grade eye drops.
Within one hour after applying nano-grade eye drops, lipofuscin can be excreted from
RPE (retinal pigment epithelium) to outer cornea. Is it so amazing !
To apply nano-grade eye drops 8 times daily for consecutive 3 months, it's plausible
that vision can be restored because Muller glia are retinal stem cells that can be
triggered by nano-grade eye drops for regeneration of optic nerve, photoreceptor cells
and RPE.
Please browse www.godforeye.com
All glory belongs to God !
God bless all Stargardt's patients.
It's really good to see people with the same problem because they are the only ones who can just not understand but can feel the pain within. I feel I'm not alone now
+BHANU SRIJA Chitta i'm glad to hear my videos help you to feel less isolated. i'm here for you, friend :)
+meganwhitman May I know what you doing right now? Are you studying or working?
+BHANU SRIJA Chitta both! I am in graduate school and I work part time.
My friend has Stargardt's for 25 years. It has now run its course untreated but he still has a normal life and many people do not even notice. Driving and reading can become hard, but this disease will not make you completely blind to my knowledge. Also, there is a lot of research and promising cures in the pipeline and it is now possible to reverse or at least halt the progression in the earlier stages.
Hey hi i also have Stargardts thank you so much its very helpful
i am so used to having stargardt that it did not come to me to make a video before seeing yours.. i have stargardt for 10 years and my vision is very bad but it dose not matter since i am ok with it. i will star making my set of videos that you will not understand since they will be in romanian but.. thank you for the idea and i am glad to see i am not the only "full" to be ok with having stargardt
Great video! I am also legaly blind due to a inherited eye problem.
Like your good spirit!
Do you know that there is a special guide/assistent service available for visually impaired while flying! Then you will be treated like a VIP!
I have used it and my youngest daughter who travels a lot uses it when she travel by her self.
Keep more videos coming!
Greetings from Sweden
Stefan
u wanna know whats the worst thing is not being able to drive i had it for 16 years but always stay positive i am thankful everyday for the sight i do have
I agree.. I am living with the condition 20 years.. I'm 28 now, I'm Irish and I live in the countryside and I would give anything to be able to drive!!
right well its nice to meet u
Hey! my name is abby and im 15. I also have stargardts. Thank you for making a video because you are only one of three people who i even know have it. It is good to hear from someone in college because i am worried about that. I start college clases next year (im a sophmore now.) Can you drive?
Great video!
I have Stargardt's too :) for about 25 years now.
Hi I have had Starcraft for a year how does it get from here ?
+mrotnicki hi! sorry I haven't replied to your comment yet! i'm glad you found my video and I hope it helped you in some way :)
+chelseastar2001 hi! i'm sorry I am just now seeing your comment. for most people, Stargardt's doesn't get worse after being diagnosed. it usually stabilizes. some people, however, experience a gradually decline in their vision over time. My vision hasn't changed since I was diagnosed 8 years ago. On the positive side, there is so much research being done on the disease, so I am hopeful a cure is just around the corner!
HI Megan, my name is Luis i live in mexico i just found out last week that i have stargardt but i have 14 years with visual problems and glasses really never helped but nobody understands why i have glasses but still can't read, i play sports and i'm pretty good at basketball and my friends still don''t understand how can i play so well having this visual problem, and i also don't understand how can i play that well if i sometimes have problems seen the basket jajaja, and is really good to know that other people have this problem and really understanding a little bit of this disease, hope you are ok and thanks for this video :D
hey, Luis! thanks so much for watching and sharing a bit about yourself with me. it can be tough living with Stargardt's sometimes, but it isn't the end of the world. we face challenges others may never face, but we grow a individuals because of those experiences! i hope all is well with you! take care xoxo
Hi, You did a very nice video. I am also passing through Star guard. Wish to know the techniques that you apply and any recent technology that can help us.
My mom has that it's been hard for her but she got use to it😩🙏💕
I know it's hard having this especially during teen years. I am now 25,but went through HS with this. People don't understand things so they may make fun of it. Just know those who may make fun are ignorant, and just ignore it. Don't let it bother iyou at all. Ppl are immature at that age, just educate ppl who may not know..
Thanks for the video, now I know I'm not the only one.. I also have it, had it since when I was 13. Well thanks again. :)
Great video megan..!! Do you know anyone who participated in a clinical trial ?
I am planning to be a part of a clinical trial about to start in a couple of months in Los Angeles, CA at UCLA. Anyone knows somebody who was in a clinical trial it would be very helpful for me
thanks for the tip, Sophie!
Hello Megan,
My daughter just got diagnosed with Stargardts. She is a college student as well. Have you looked into any recent research studies like stem cell or anything else? There seems to be a lot of promising results out there. What do you recommend?
I'm looking for information on it, do you have any suggestions of where I can start finding out more about it?
i also have stargratd disease! i can relate in this video!! huhu its so hard to explain to the people what are we experiencing!
Please make more vlogs I really liked yours
Megan. My son is 8 and we have a high probability he has starguardt. I will try to get the app to understand how he sees. Can you please tell me your vision 20/X? Thanks for the video.
I have this it's terrible I was diagnosed in 2008 I was in first grade
I understand this.
i think i have one it seems progressing. late 2014 i have a symptoms of gray shades
but this year 2018 new symptoms appear which is permanent black(white eye closed) spot and high sensitive to bright lights.
what scares me is that im 26 right now, scared being blind when i reach 30s. i don’t know how fast is the disease will progess.
My son has Stargardt's Disease. We are hoping that Advanced Cell Technology will be able to cure Stargardt's.
Hey there is a spect called Surevision .I think it may make a difference in the eyesight . what do you say about this ?
HI Megan !Let me copy and paste to you from Lindi Golf
I have stargardts too and I can relate to you so much! and great video thanks
thank you so much! these videos are just a selfish way for me to find some comfort :) it's really nice to know people can relate! take care xo
hi , eating broccoli there are some important elements they can stop the degeneration of the retina, I have a stargard too. i hope can help someone.
thanks for the info! any little bit helps!
Hi Ihave Stargardt aswell , i live in Newark New jersey .
i have Stargardt and trust me no doctore is trying to heal this problem because there ain't many people like us and they won't get a lot of money from the treatments. this is life :(
Finally i know this video is from 2013 but i am still looking for someone to reach out to i have been diagnosed since age 9 i am now 21 and i am at end stages would love to connect and talk
+Tiffany uber hi tiffany! absolutely, let's connect! add me on facebook and we can chat there facebook.com/megan.whitman.52
hi my name is Isabella and I was diagnosed at 11 and in now 16 just wondering how you did high school I'm really struggling
I haven't been diagnosed yet, but I have a very high chance of having stargardts. In school its horrible, not being able to see the board or anything. Btw, im from Wales, UK.
H
Tyler Ashfield hey Tyler! thanks for you comment. school can be incredibly difficult at times, but just remember that you have every right to succeed, just like any other student. it's hard to accept help from others sometimes, because it makes you feel like you can't take care f yourself, but don't let pride get in your way. if you wanna chat more, feel free to add me on facebook! i've got lots of unsolicited advice to give :) fb.com/megan.whitman.52
I just found out my boyfriend has this, I wanted to find out more thanks
I do not travel,I can't afford to travel and I feel safe or secure travelling by myself.
Please could you let me know ur best corrected visual acuity
I have stargardts and anytime I text and FB i always have a milion type-O's on my messages and people simply think I am a dutz. But in really I type blindly without being able to ready what I post. I jjust deal with it. Sometimes I feel like my family does not understand how serious of a condition this is.
I too have Stargardt disease sister
i have it since i was born, im colorblind and see blury .. they said it wont get worse im just 17 but it's really scary.. coz i always think i would get blind in the future ;/
OMG hi! My names kaytlin I'm 14 I I have stargaurts I've never been able to find anybody that has this and understands what it's like ! I was diagnosed in 2011 I'm just starting jrh and they gave me this thing called a visio book and I absolutely hate it and I've gotten made fun of because of it my vision is 20/200 my vision has stop getting worse it's so hard because everybody thinks that my vision is blurry and all this stuff and nobody listens to me any advise !?!?!
i have stargardts too i would really like to contact with you im from morocco, africa and im only 16years old i found that im legally blind a year ago i would love to hear you story and tell you mine
+Ouhramskour hi! sorry for my late reply to your comment. i'd love to chat with you about your experiences with Stargardt's! add me on facebook and we can connect facebook.com/megan.whitman.52
Some Stargardt's patients treated by God's mercy, i.e. nano-grade eye drops, are greatly improved
their vision and they're so willing to be the witness so that other Stargardt's patients can
be coveted by God's mercy too.
Please browse www.godforeye.com or contact: service@lorati.com.tw
All glory belongs to God !
God bless all of you !
hi there :) im cinndy .. well i have a friend she has stargardt .. she's always crying and telling me that there's no cure . i cant see her in that place. she's always saying "theres no cure. im getting blind". i dont know what im going to say to make her stop. :(
Thanks for reaching out! If you need someone to talk to, you can always contact me on Facebook! fb.com/Megan.whitman.52 I'm happy to help however I can!
i have stargardt too
+Lucas Prado Me too
+Lucas Prado glad you found my video. hope it helped in some way!
+Mc Drew glad you found my video too! thanks for watching and I hope it helped you in some way
Check The Blind Life Lots of stuff on his sight
Hi Megan.I undesrtand you.But I am very poaitiv because you,I and all people with startgardt never be apsolutly blind!! :)Keep calm :)
+Мирослав Д. Danilovic thank you for your positive message! I wish you all the best xx
hey girl! Stay positive, I also have stargardt's and I had a hard time accepting it so I kept it a secret. I completely understand your college challenges as I am unable to attend dental school because of stargardt's.… But know I doing great and I started a blog! www.blindgirlssee.com meganwhitman
Hi! I was recently dignosed with stargardts and you have no idea how much this video actually has helped me. I'd love to actually talk to you about it and get some advice of you since you have been dealing with it for a number of years. If it is okay with you, you could add me on facebook? My name is Kya White. Xx
I'll definetley add you now:-) x
Jenna Palmerio i added you i think, i'm not to sure if it is you or not haha!
hey Kya! i'm sorry i'm so bad about replying to comments quickly! my facebook is fb.com/megan.whitman.52! i'd love to chat with you!
Jenna Palmerio hey Jenna! i think i just added you on facebook, so we can chat there if you'd like!
now i'm **
Please make more vlogs I really liked yours